change

Something that I’ve become more and more aware of in recent years is that I hate getting my hair cut. Really hate it – in much the same way as many people hate going to the dentist.

It may seem odd that I’ve only recently become aware of this – surely you know if you hate something, after all! But as I grow in self-awareness, I am realising that that the simple act of knowing how one feels about a certain activity is not so simple when you’re on the autism spectrum. Being hypersensitive to so many things, you are often simply in a state of overwhelm. You are generally feeling a whole lot of things at any one time, and can’t automatically distinguish what they all are, let alone what caused these feelings in the first place.

I began to realise that I hate getting my hair cut when I became aware that I was putting off going to the hairdresser. I would know I needed a haircut – my hair was getting more and more uncomfortable as it grew longer and the style grew out, and I really wanted it to be cut – but somehow I would find excuses not to go. I would hate thinking about it. I would finally go into town, find a hairdresser, ask if they had an appointment at that time, and if they did, I would go for it, and get it over and done with – and then go home and cry. A few years ago, I found a hairdresser I was comfortable with, and it was such a relief. I saw her each time I went, but then she moved to Australia. And I was devastated – feeling terrifed about finding another one. Clearly these were rather extreme reactions, so you’d think I’d realise from this what a big deal it was. But these things would flit from my awareness – they would bother me greatly at the time and then I would forget about them, and so I didn’t build up any awareness of a pattern for a long time. Nor did I analyse exactly what it was that I hated.

I think part of it is that logically there didn’t seem any reason to hate it. I knew a haircut was supposed to be a nice thing – a treat, a pampering. And when society tells you that something is wonderful, it can be hard to actually process the fact that you don’t share that feeling. Going to the dentist was fine – I knew that was supposed to be horrible, so I was prepared and could easily process my feelings of dislike and go ahead anyway. But the idea of having my hair cut elicited lots of conflicting and confused feelings that I’d never really thought to analyse.

Interestingly, when I first started reading about autism, many years ago, one thing I kept coming across was the idea that autistic children hate getting their hair cut because it actually hurts them. These (very old-fashioned and dated!) articles would claim that while cutting hair doesn’t hurt a ‘normal’ person, it actually hurts an autistic person – they can actually feel their hair getting cut and it hurts. So I’d read that and took a pair of scissors and cut one of my hairs, just to see if it hurt. No, my hair was normal hair, I realised – not autistic hair. It doesn’t hurt. Same as fingernails. So I’d concluded that getting my hair cut doesn’t hurt.

More recently, I’ve realised it does hurt – but not in the simplistic way that those articles seemed to be suggesting (or possibly I was misinterpreting, taking them too literally! A difficulty with being autistic is never quite knowing if a misunderstanding is due to your autism – it can be, but certainly isn’t always). It’s not that I have feeling in my hair – rather, it’s the pulling of my hair that comes with brushing and combing and tying bits up. My head hurts afterwards. And the blowdrying always causes me distress, because the hairdryers are put so very close to my head and they are too hot, and feel intrusively close. And the smells of the various stuff sprayed in the room (even when not sprayed at my head) overwhelms me. It’s just an overwhelming, painful experience in general.

And there’s the fear of the unexpected – not knowing quite how it will look at the end. Will it be okay? Will the sides be the same length? I’ve had many a hairdresser get annoyed with me in the past because I said that one side was longer than the other, and I wanted them even! A main reason I was comfortable with the hairdresser who went to Australia was that she would simply laugh in a friendly way when I explained I wanted the sides even – she was totally laid back about it and that made such a difference. It can be a frightening feeling when someone is irritated with you. Also, she didn’t chat to me, which also made a difference. It’s not that I can’t make myself do small talk when necessary, but having to make small talk to a stranger while on complete sensory overload is very exhausting. Especially when they ask: ‘What are you doing today?’ or ‘What are your plans for today?’ – and you think in a panic: ‘Gosh, what do I say? Am I supposed to have plans beyond this? I have no idea what I’m doing – I’ve mustered all my energy to get my hair cut and haven’t thought beyond that! This is what I’m doing! Getting my hair cut! Then I’ll go home and recover!’ But of course, one can’t say that, so I generally say something vague like ‘Oh, I’m going shopping’, and hope they don’t ask what I’m buying!

I’ve been wanting to write about this for a couple of years now – each time I’ve been to the hairdressers and come back home feeling quite traumatised, I’ve thought to myself: ‘I must write a blog post about this. I’m sure there must be others on the autism spectrum who are the same.’

Actually, now is probably the best time for me to be writing about it, because I have finally come up with a solution, which seems so simple I don’t know why I didn’t come up with it years ago. There are hairdressers who come to your home. And there are hairdressers who let you go to their home. And it’s so much simpler that way. You’re not in a noisy, smelly environment. You don’t have to have your hair blowdried in a certain way (in theory you don’t in a hair salon either, but no matter how many times I’ve asked the stylist to keep the hairdryer at a distance from my hair and not touch it, and they’ve agreed, they always end up doing it the way they always do it!). It’s more peaceful and more personal and easier to process. It’s cheaper too, which is always a bonus.

The difference with home hair stylists is that often it’s through word of mouth that you hear about them – and many of us on the autism spectrum don’t tend to be very chatty, and often we are not in the know about the various social things that people talk about. I realised I’d have to make the effort to ask colleagues about where they get their hair cut, and whether they knew any home stylists. But once I did that, I realised it was much easier than I thought. A lot of women love talking about such things and have all sorts of connections! One of my colleagues has a daughter who is a hair stylist and cuts hair in her own home as well as in a salon, so I went to her home. Much less stressful than going to a salon! Much quicker too. And now I’m at the stage where my hair really needs cutting again, and for the first time, I’m not the slightest scared about making an appointment.

One thing occurs to me to mention before I end. Those of us on the autism spectrum are often thought to have an irrational fear of change. And if I weren’t able to express myself in words, it would be very easy for people to see my distress at having my hairdresser move to Australia as a typical example of this. It’s not a big deal for most people to have to change hairdresser, after all. But if you see it in terms of sensory hypersensitivity, and having extreme difficulty with a certain type of experience, it starts to seem a lot less irrational – of course if something generally causes pain and discomfort, it is incredibly important to find someone who can do it in a way that minimises these feelings – and when finding such a person is difficult, you want to keep the one you’ve got! The same can be applied to all sorts of things – when you see an autistic child who wears the same clothes over and over and gets distressed at having to buy new clothes, it may well be that the clothes he’s got used to are the ones that cause least discomfort. Having to start wearing new clothes potentially causes a great deal of pain and discomfort.

It’s been a while since I wrote a blog post. It’s not that I don’t have anything to say – I’ve thought of all kinds of topics to write about, and planned them in my mind, but somehow the actual act of getting myself to sit down and writing them seemed hard. Not that I find it hard to actually write blog posts – I like to write them – but what is hard is the actual switch from whatever I’m doing to something different.

As this is a common aspect of Aspergers, I decided I might as well write a post about it – as a way of both explaining my absence and illustrating why people on the autistic spectrum have difficulties with organisation, and why the ‘perseveration’ thing happens.

I’d never actually heard the term ‘perseveration’ until I started reading about autism and Asperger Syndrome, and then I immediately knew what was being described. I can illustrate in by talking about the past couple of weeks.

Once I started doing the ‘100 things’ strategy described in my last post, I became focused on organisation. I started planning my meals for the week too, which got me thinking about health, and starting to plan exercise. I started keeping a journal to keep track of all I do each day, dividing my life into various categories, such as ‘house’, ‘food’, ‘exercise’, ‘finance’, ‘relaxation’, etc. This became the focus of my life for a few days – I had to be constantly aware of it for it to work, and in order to be constantly aware of it, I had to focus my mind on it to the exclusion of all else.

Then I started going for walks in the woodlands and in the moors. This seemed a logical way of combining the categories of enjoyment, relaxation and exercise, because I really enjoy such walks. Once I started, I would walk for hours and hours, so walking became the focus of my days. I started taking photographs of the trees, because I love trees – their shapes fascinate me. My days became totally focused on woodland walks and capturing them in photographs, and then collecting these photos onto my laptop, cropping them and resizing them. I completely forgot about all other aspects of organisation, and the journal I was keeping. I just remembered it yesterday, and realised I hadn’t written in it for six days.

When I stand back from this, I feel frustrated, because although I love walking in the woodlands and the moors, I don’t want my whole life to consist of that. I also love reading novels, and had actually planned to do some reading. I always took a book along on my walks, thinking I would sit down at some point and read it. But somehow my mind just wouldn’t switch from walking mode to reading mode. I was walking and I would keep on walking. I would sit down sometimes on the walks, to have something to eat, but I wouldn’t read, because reading seemed like a completely different world. The switch from focusing on the walk and the trees to focusing on a book seemed like a vast chasm.

This isn’t to say that I can’t read when on a walk – but to do that, my whole focus would have to be on reading. I’d be oblivious to the beauty of the woodlands and countryside around me. When I was a kid, my focus was often entirely on reading. Wherever I went, I would bring a book and I would read it – read it while walking along, reading when stopping anywhere, etc. – because reading was what occupied my mind.

I’m trying to think of an analogy so people can understand the difficulty switching from one thing to another. It’s kind of like moving to another country on the spur of the moment. For most people who have lived in the same country all their lives, this would be an enormous and difficult transition – because your mind is accustomed to your own country. You have learnt to take many things for granted which would all change if you moved to another country – it would be a huge transition, and would be very difficult to just switch from your life here to moving there. Not just in practical terms, but in mental adjustment.

Interestingly, I moved to Canada for five years when I was 21, and many people said how brave I was, but to me there was nothing unusual about it, because all changes are huge for me. Moving to Canada was no different. Obviously, in practical terms, the actual act of switching from walking to reading is nothing like the act of moving to Canada. There were all kinds of complicated things involved in moving to Canada, like applying to be a student at the university, getting a student visa, organising accommodation, booking a flight, etc. – whereas switching from walking to reading just involves sitting down and taking a book out of my bag, opening it and reading it. But the difficulty is not in the practicalities of the act itself – it’s in the switching of mindset.

This is why people on the autism spectrum often develop special interests. Once we are focused on one thing, it is so much easier to keep focusing on it than to switch to something else. Something else may arise from it, as a side thing, like woodland walks arising from my focus on organisation, but it arises because of a link. It’s much easier to switch naturally to something that is somehow linked than to switch to something which is unrelated. For instance, when on my walks, I started thinking about how I’d like to read some reference books about trees and flowers and insects and birds. If I were to do that, then I would probably start focusing on reading, and then may well start reading novels again. But if I were to just pick up a novel and read it today, I may enjoy it but it would feel disjointed from the rest of my life, unless there was a central theme of my life to which the book related.

This is why life can feel fragmented for people on the autistic spectrum. We often lack a sense of overall cohesion – ‘central coherence’ – so we find one thing to focus on, and somehow everything else needs to relate to this.

Understanding this can help with devising strategies. For children on the autistic spectrum, who have various activities organised by adults, it would be helpful to find some way of linking the activities, so there is not the uncomfortable jolt of switching from one to the other. For instance, as a kid, I would never want to go to bed when it was bedtime. This was because my mind was focused on whatever I was doing, and couldn’t make the switch to going to bed, which was, to use my analogy, like moving to another country. What would happen is that my mother would get angry, which didn’t help, because it became a fight, which made me even less inclined to relax and quieten for bed.

It occurs to me in retrospect that if instead there had been some kind of link, and routine, it would have been easier. It’s hard to know exactly what would have worked, but it occurs to me that maybe if lights had been dimmed, and soft relaxing music been played, or maybe a scented candle burnt (out of reach, for safety) at a certain time, then this might have somehow prepared my mind to quieten down, and I would have started to associate these sensory cues with going to bed.

I probably could do something like that for myself as an adult too (as I still have a lot of difficulty going to bed at a regular time) – although then I’d be responsible for the cues myself, so I’d have to somehow find a way of making myself do them at the right time. I’m still trying to work this out in my mind, so I have no definite strategies, but I will experiment with trying to find something that works. Maybe having an alarm clock go off at a certain time in the evening when I want to start preparing my mind for bed time – and putting the alarm clock by my aromatherapy oil burner, as a cue for lighting it, and that could act as a cue for dimming lights. I will try this and if it works, I’ll write another post about it.